Diana Cejas was 25 years old and in her second year of medical school when she found a lump on her neck. She went to her student health center, was labeled anxious — and told the unhelpful refrain that many medical students think they're dying. Second and third opinions gaslit her concerns equally, causing years to pass without a diagnosis. Meanwhile, the mass grew larger and harder. Cejas started to have episodes of dizziness and lightheadedness. It was only after demanding testing that she was diagnosed with cancer, specifically metastatic paraganglioma.
Cejas underwent two surgeries. Hours after the second surgery, her left arm and leg became paralyzed, and she struggled to swallow her saliva. At age 30, Cejas had had a stroke.
Cejas's case exposes a complicated and sometimes life-threatening side of medicine where patients are silenced or unheard. But she was different: She was a member of the medical community — theoretically, she had an advantage in navigating the system and advocating for appropriate care. She knew the language of the field. And yet, her complaints were dismissed and her diagnosis was delayed.
Now, as part of the 3% of American physicians living with a disability, Cejas dedicates her career to providing support to other students and doctors with disabilities. Teen Vogue sits down with Cejas to discuss her diagnosis, recovery, and advocacy work.
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Teen Vogue: A doctor’s mission is to support the patient. And yet we hear of cases, like yours, that lead to physical harm and mistrust of the medical system. Why do you think it took years for you to get a diagnosis?
Diana Cejas: I have been on both sides. If I saw someone who was young and relatively healthy, I might make the same decision as my first couple of doctors. I might say, “It's probably nothing,” because nine times out of 10, there is no serious diagnosis. In medicine, we have a saying, “If you hear hoofbeats, it's probably going to be horses, not zebras.”
Here is what was different about my story: I consistently came back. Even if their first thought was, “Oh, this is probably nothing,” they could have taken it seriously that I was concerned enough to continue to try to access care.
TV: If we think beyond the errors of the individual doctors, what system-level problems caused the delay?
DC: There are a lot of reasons patients go unheard. I’ll use myself as an example: I saw different doctors almost each time; I didn't have a private primary care doctor; I was using student health. I didn’t have a long relationship with a single doctor that I could keep coming back to. That discontinuity might be one of the reasons that doctors don't always get to hear the whole story from patients or don't listen to the whole story.
Time is also an issue. Doctors can't always spend enough time with their patients to get the whole story. Or maybe doctors are not listening, or they are only listening for what they think is the most important issue, in their minds.
TV: You are a Black Latina woman, a physician, and a person living with a disability. How do you consider the way personal identity influences access to adequate health care?
DC: We do not do a good job, in medicine, of listening to people who have a minoritized identity. We, as physicians, don't take pain as seriously as we should in these populations. Some of that is due to growing up and living amongst the general cultural considerations that we have against these identities.
Also, the field of medicine can beat the humanity out of physicians. We start to see everything as a task. And we don't see the vulnerable person that's in front of us. We're just trying to get to the next patient so that we can get to the next patient so that we can get to the end of the day.
TV: The unfortunate aspect of your case is that it wasn’t just a delayed diagnosis, you were left with emotional trauma and residual physical symptoms. How has your recovery progressed?
DC: I'm not going to say I'm overcoming my disability. I'm always going to be disabled. It’s part of my identity. My left arm and leg were paralyzed when I first woke up from surgery. My leg improved, but still has trouble keeping up with the right side. My left arm is weak, and I have stereognosis, which means I cannot tell what my hand is touching. I'm not ever sure how hot or cold something is [when using the left arm]. I am dysarthric, where I slur my words; most people tell me they cannot tell, but I can. I have a lot of scarring because of so many procedures that I've had to do in the area.
TV: What were the steps you took to get back in the workplace after a stroke?
DC: There was nothing formal. My program directors and some of the leadership in my residency programs were incredibly accommodating. There were, however, some disappointing conversations, especially when I started asking for accommodations. People acted like I was requesting special treatment. I was just trying to do the job that I needed to do.
TV: How should individuals with disabilities advocate for themselves?
DC: Acknowledge that it's difficult, especially when you're in positions with little power. Have allies to connect with, ideally in positions of relatively more power than you. You also have to figure out how safe you are.
Society is still very ableist and discriminatory against disabled people. So you will be told no, you're going to be told you can't do this, you're going to be told, “It's not possible for you to achieve.”
There's so much stigma and shame around doctors with disabilities that a lot of us are quiet about it if we can be. And those of us who can't be quiet, we experience a lot of questions about our fitness. Be unapologetic about what it is that you need, particularly around accommodations. We're so used to seeing accommodations as special treatment. But that's not what they are. It's just something to help you be able to do what it is you need to do.
I wear glasses and contacts — that's an accommodation for the fact that I cannot see very well. No one would say, “You can't wear your glasses here.” We need to think about all disabilities in that light as well.
TV: How can we be better allies at the individual level?
DC: The larger culture within the United States is very ableist and discriminatory against disabled people. We shouldn't necessarily only glorify people being the smartest, the healthiest. Listen to people with disabilities. Learn as much as you can about disability history, disability rights, and disability research. Look at ableist language; you'll notice how much of it is embedded in our own personal vocabularies. Recognize everybody's inherent value, particularly when you're thinking about people with disabilities who need significant support. See them as people who have their own thoughts, minds, hearts, and values. Those are things that we could do. All of this sounds so very simple because it is.
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